What mattered was that he showed up — that he put himself in front of the people whose opinions on the arcana of U.S. fiscal policy would have a direct and immediate impact on his weakening body. The point was for them to see his frailties, hear the catches in his voice and the kludginess of his diction.

Perhaps then they would understand that they were voting on the question of whether to kill Ady Barkan.

The massive Republican tax bill that sped its way into law these past few weeks has at times seemed like a blur of obscure details ― rates, deductions and exemptions ― decipherable only to accountants and seasoned policy wonks.

But in two face-to-face conversations with key Republican senators, Barkan, a 34-year-old progressive activist diagnosed just over a year ago with ALS, or Lou Gehrig’s disease, managed to boil the technocratic debate down to the straightforward life-and-death questions at its center.

Days after a Dec. 7 airplane conversation about the bill with Sen. Jeff Flake (R-Ariz.) that quickly went viral, Barkan flew back to Washington, D.C., from his home in Santa Barbara, California, to take one last shot at killing the legislation ― this time with the help of his wife, Rachael King, and their 18-month-old son, Carl.

Barkan was once an energetic young dad who took runs on the beach and hiked in the mountains, but ALS, a terminal illness that paralyzes its victims over time, has slowly deprived him of his strength. He can’t pick Carl up, and his movements have become more awkward and constrained, his voice softer and more slurred than it once was. He usually just needs a cane to walk, but on Dec. 13, a day of activism against the Republican tax bill on Capitol Hill, he opted for the extra support of a wheelchair.

Barkan and hundreds of like-minded activists had centered their opposition to the tax bill on the cuts it could generate to essential social programs. They feared the tax bill’s addition of $1.4 trillion to the debt would trigger pay-as-you-go, or “Paygo,” rules ― resulting in across-the-board spending cuts to programs like Medicare that Barkan will depend on as his disease progresses. Specifically, Barkan will need an expensive ventilator and the near-constant help of professional medical staff in the coming years.

While Congress wound up waiving Paygo, critics believe that the budget hole created by the tax cuts will generate enormous pressure to cut Social Security, Medicare and other public benefits. House Speaker Paul Ryan (R-Wis.) has said that slashing these programs is next on his agenda.

And the tax bill’s elimination of the Affordable Care Act’s individual mandate is due to destabilize insurance markets and add 13 million people to the ranks of the uninsured.

Upon his return to Washington, Barkan rolled into the office of Sen. Susan Collins (R-Maine), accompanied by a delegation of the state’s activists, for a meeting they broadcast live on Facebook.

When Collins arrived, Barkan grew solemn. Each member of the group went around the table describing his or her acute health care needs and fears about the changes the massive tax cuts could set in motion.

Collins listened intently. When pressed about Paygo, she repeatedly reassured the activists that she had secured a written promise from Republican leaders in Congress that Paygo rules would be waived.

Barkan and the other activists argued that Republican leaders could break their promise, much as they did the promises to hold the middle class harmless in the tax bill and not add to budget deficits. (Reducing tax deductions, including the state and local tax deduction, in the bill is expected to result in a net tax increase for millions of middle-class households.) “I believe the commitments that I’ve received,” Collins responded when challenged.

That’s where Barkan lost it. Up to that point, he had been speaking in a gentle timbre, but the thought of entrusting his well-being to a pinky promise from Senate Majority Leader Mitch McConnell (R-Ky.) was too much.

“I know,” he said, the strain audible in his voice, “but it’s my life on the line!”

The meeting ended without a resolution. Collins wound up voting “yes.”

It was a defeat, but at least Barkan had made the stakes of her decision plain, both to the senator and to the many Americans following the run-up to the vote. This was a vital sort of activism in every sense of the word. Not for the first time, Barkan had reduced the dispassionate interplay of American politics to its moral essentials.

Meet the Hosts

Rev. Rodney Sadler

Dr. Sadler's work in the community includes terms as a board member of the N.C. Council of Churches, Siegel Avenue Partners, and Mecklenburg Ministries, and currently he serves on the boards of Union Presbyterian Seminary, Loaves and Fishes, the Hispanic Summer Program, and the Charlotte Chapter of the NAACP. His activism includes work with the Community for Creative Non-Violence in D.C., Durham C.A.N., H.E.L.P. Charlotte, and he has worked organizing clergy with and developing theological resources for the Forward Together/Moral Monday Movement in North Carolina.
Rev. Sadler is the managing editor of the African American Devotional Bible, associate editor of the Africana Bible, and the author of Can a Cushite Change His Skin? An Examination of Race, Ethnicity, and Othering in the Hebrew Bible. He has published articles in Interpretation, Ex Audito, Christian Century, the Criswell Theological Review, and the Journal of the Society of Biblical Literature and has essays and entries in True to Our Native Land, the New Interpreter's Dictionary of the Bible, the Westminster Dictionary of Church History, Light against Darkness, and several other publications. Among his research interests are the intersection of race and Scripture, the impact of our images of Jesus for the perpetuation of racial thought in America, the development of African American biblical interpretation in slave narratives, the enactment of justice in society based on biblical imperatives, and the intersection of religion and politics.

People Power with Ernie Powell

Ernie Powell has been involved in public policy, progressive campaigns and grassroots efforts since the mid 1960's. He worked as a boycott organizer with the United Farm Workers from 1968 until 1973. He then became a community organizer in Santa Monica, California involved in affordable housing advocacy while working with others in laying the foundation for one of the most progressive local rent control measures in the country. He organized on behalf of environmental and coastal access and preservation issues in California as well. Beginning in 1993 he served as Advocacy Representative and later as Manager of Advocacy for AARP in California working on national and state issues. He left AARP in 2012 to work as Field Director for the National Committee to Preserve Social Security and Medicare in Washington D.C. In late 2013 he returned to California and started a consulting business. He is a consultant with Social Security Works and is organizing groups nationally to fight for the protection and expansion of Social Security. He also consults with the California Long Term Care Ombudsman Association on issue impacting nursing home reform. He is a frequent author for Zocalo Public Square having just authored a piece on Social Security's 80th Birthday about the early impact of the Townsend Plan in building toward the passage of Social Security. Ernie has hosted two radio shows - the "Grassroots Corner" on "We Act Radio" in Washington D.C.and "the Campaign with Ernie Powell" at Radio Titans in Los Angeles. His focus for over 25 years has been on public policy issues impacting older Americans. He is a nationally recognized expert on grassroots organizing and campaigns. He is 66 years old and resides in Los Angeles, Ca.

Radio Host - Agitator Radio

Robert Dawkins is the founder of SAFE Coalition, North Carolina located in Charlotte, North Carolina. SAFE Coalition NC is a grassroots community coalition working to build public trust and accountability in NC law enforcement. We believe that critical dialogue, citizen oversight and legislative action are required to design a safe, accountable, fair and equitable system of criminal justice in our state.